Any Entyvio users who previously stopped Remicade or Humira due to antibodies or drug-induced lupus?

I have Ulcerative Colitis and was on Remicade for 2.5 years. While my GI was pleased that I no longer had blood in my stool during that time and my scopes showed improvement, I never felt well during the treatment. I had bouts of joint pain, fatigue, severe sleep disturbance, overall weakess/malaise, rashes, flushing, etc.

Finally, a blood test was done that showed very high HACA (anti-Remicade) antibodies. This meant I had to stop Remicade immediately and switch to Humira. I then saw a Rheumatologist who conducted additional blood tests that showed very high anti-dsDNA antibodies and anti-histone antibodies. He diagnosed me with drug-induced lupus (DIL, or DILE) and all my doctors predicted that the antibodies and lupus would resolve within a few weeks or a couple of months after stopping the Remicade. Meanwhile, I had two loading doses of Humira and immediately formed anti-Humira antibodies, so that was discontinued.

I have been on hold for 12 months now waiting for my antibodies to become normal. When they do, I can start Entyvio (generic name Vedolizumab). It has been recommended that I first start Methotrexate 15 mg to reduce the chances of forming antibodies against Entyvio, due to my history. (I also had a prior history of bad reactions to 6MP, Asacol, and Prednisone.)

For those of you on Entyvio who previously stopped Remicade or Humira, did you have drug-induced lupus (DIL)? If so, I'd be very interested to know if you feel better on Entyvio and if you are taking Methotrexate or a similar drug in combination with Entyvio.

If you were not diagnosed with DIL, do you know if your doctor ever tested you for the antibodies listed above, or did you just change medications? Did you have joint pains or other lupus symptoms?

I wish there was a commercially available test for antibodies against Entyvio, but I understand it will probably take a while before that hits the market. Humira was used for years before Prometheus Laboratories launched a test for antibodies against it. Accordingly, until 2013, I believe patients could not be tested for anti-Humira antibodies.

I am worried about whether the next plan for my medical treatment will make me feel better or worse. I would welcome hearing about pertinent experiences of others. Thanks!

Post Edited (working2Bhealthy) : 1/7/2015 11:32:07 AM (GMT-7)

Same situation for me - a long journey to get back to normal after remicade-induced lupus. I haven't decided to do Entyvio yet.
See my thread 'Severe joint pains, stopped remicade, so sad' started in May 2014.
One of my lupus antibody tests is still positive but fortunately lower.... They said it should resolve within the year. Fingers crossed.
Will be interested to hear how you fare.

I was just reading about the formation of Entyvio antibodies. The rate of developing them is 4% after 52 weeks of use. Not very high, IMO. You could also try taking an immune suppressant such as 6MP or Azathioprine to prevent antibody formation.

Hi. I just now came across your post from over two years back. I also have Ulcerarive Colitis, Pancolitis to be exact since 2007. I, like you, developed Drug induced Lupus from Remicade after being on it for three years. My GI then put me on Humira but the Lupus symptoms didn't go away despite my continuous complaining to Rheumatogist and GI doctors of it. After a year and a half of Humira injections they FINALLY determined the Humira was also doing the DIL since the basic make up of the meds were so similar. I was then put on Entyvio two years ago. I have been doing really well with it except for the joint pains but as my GI explains it the medication goes directly to my gut and doesn't help the other UC symptoms, and I can't take the methotrexate. I just had my most recent infusion almost two weeks ago and I have been miserable ever since. I feel like I'm having a lot of those DIL symptoms. I just don't understand it though since this infusion is so different than the others that caused it. I can't do the methotrexate due to getting drug induced pancreatitis three times from imuran, and the last two of the 5-ASA meds I tried to take. My GI said it's a definite no and I would get it again if I took that.
(Prednisone is a problem for me also. It gives me excruciating pain in my joints and muscles so I don't even get it in a premed form before infusion anymore).
I emailed my doctor explaining all happening right now and he is ordering labs to check for antibodies and check my Entyvio blood levels.
I haven't heard of antibodies from Entyvio before. So while searching for online answers I came across your post/questions here. I haven't met or heard of anyone who had such crappy luck as I've had with these IBD meds.
I hope you're doing well & your UC is controlled well enough for some "normalcy" in your life. Please let me know how you are doing/did with Entyvio. Thanks for your time.

I have had UC for 35 years (taking 50mg) prednisolone per day when relapsing. However went into remission about 15 years ago (due to taking up smoking which at the time was not aware that smoking causes UC sufferers to go into remission. I just thought it was just good luck. However for some reason, (stress propbably) I relapsed early this year and have not been able to get it under control. The pred is no longer working. and up until now prednisolone has worked for me although in very large doses. However have had to go on Humira but after 2 weeks suffered severe join pain...could barely walk or get myself out of bed. so with a blood test it showed I had developed Lupus.

I stopped the Humira and have had my first dose of Entivia last week. After two months of not being on humira I have had another blood test and my Lupus markers have not reduced at all. I am not in as much pain (just a few joint spots that hurt in my hips) but am wondering if the medication induced lupus will disappear eventually or will I be stuck with it. Am a little in limbo land at the moment...not well with the UC and not entirely free of joint pain. Am taking a small dose of prednisolone (10mg) per day just to keep the UC more under control and waiting for the Entivia to kick in. Any advice would be greatful.

If the lupus is truly medication-induced then it should clear up after ceasing the offending medication. Biologics can take a while to clear completely from our bloodstream. Assuming you completed all Humira loading-doses and were in a maintenance dosing phase then it could take 6-months to remove half of humira from your bloodstream, and another series of months to remove all signs of it. Can take more time or less time, as it varies by person. If you are 2-months post-humira, then there is still some left in your veins, unless you only took 1-shot or some other limited amount.

Although, we can also get auto-immune conditions in 2's and 3's. So, it is possible that being on that medication was coincidental and you would have developed a lupus even if you were medication-free. We've got a number of posters who have secondary auto-immune conditions like sjogren's syndrome, psoriasis, Rheumatoid arthritis, amongst others.